The idea of 'too much information' is bad for our health. It's time we ditched it

I have been in pain for more than 20 years. From my very first period I knew something was wrong, but I found it hard to pinpoint what.

I asked my friends at school what their cycles were like. We shared the most common symptoms – the cramps and fatigue – to some extent. A few were bold enough to mention the impact on bowel movements or that they experienced hormonal migraines. No one wanted to go into details, though. No one was willing, or equipped, to use the medical terminology for the things that hurt us. The conversation ended swiftly with talk of chocolate cravings.

If my school friends and I had been able to safely and knowledgeably talk more openly, I would have discovered that my symptoms were worse than I thought. I was missing school because of my periods. I was anaemic due to the heaviness and length of my bleeds. I had pain that lasted up to three weeks of each month. This wasn’t normal; I wasn’t “just unlucky”, as my friends mistakenly led me to believe.

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It would take more than a decade of my mum and I pleading with doctors and specialists to take my pain seriously for me to be eventually diagnosed with dysmenorrhea (painful periods) and menorrhagia (abnormally long and heavy periods). Later I would be told I also had polycystic ovary syndrome (a chronic hormonal condition causing ovarian cysts) and endometriosis (a chronic illness where tissue similar to uterine lining forms outside the uterus – primarily in the pelvic cavity – causing pain, potential fertility issues and, in extreme cases, organ dysfunction).

At 28, the damage those conditions had done to my pelvic nerves led to a diagnosis of chronic neuropathic pelvic pain. By 35, I identified as disabled. The medical gaslighting, the dismissal of my pleas and the toll of the pain have also had a devastating effect on my mental health.

Throughout history, people with a uterus have been silenced and sidelined for being too emotional. Historically this was blamed on a catch-all non-diagnosis of hysteria; now it is more common to identify these complaints as the effects of hormones. But people with endometriosis or other similar conditions are certainly not the only ones whose genuine health concerns are dismissed as “TMI” – judged to be holding Too Much (private) Information to be discussed openly. This is a widespread concern that needs to end.

Men’s mental health is at crisis point in Australia. Antiquated ideas that blokes should “just get on with it”, or that the pressure to be breadwinner is more important than that to be a healthy and happy father, husband, partner and friend, have led us to today – where, according to Beyond Blue, men “make up an average six out of every eight suicides every single day in Australia. The number of men who die by suicide in Australia every year is nearly double the national road toll.”

In the past 12 months we have seen high-profile examples of this in the deaths of the former AFL players Danny Frawley and Shane Tuck. Tuck’s father, Michael, was quoted in the days after his son’s death as saying that Shane was one of many men who “think they’re all right and they’re actually not”. Rather than talking about what he was feeling, Shane “kept it all in because he was a tough, strong man”. Michael implored men to “express yourself with honesty and don’t try to cover up things”. Those things we fear are too much to share become rallying cries in our wake.

TMI exists beyond the gender binary, with devastating results. Our society at large does not allow for a safe space in which to talk openly about the gender spectrum and gender dysmorphia. In doing so we contribute to a transphobic culture that significantly undermines the mental health of trans, intersex and non-gendered people.

This is demonstrated in the significant numbers of attempted suicide by trans folk in Australia. According to the National LGBTI Health Alliance’s 2020 snapshot, compared with the general population, transgender people over 18 years of age are “nearly 11 times more likely” to attempt suicide. In addition, 35% of transgender adults “have attempted suicide in their lifetime”. (For comparison, 3.2% of those over the age of 16 in the general population have attempted suicide in their lifetime.)

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We need to recognise as a society the effect these outdated ideas about what is and what is not appropriate to discuss openly are having. There are significant and growing numbers of people within society facing extreme pain. While for many this comes from being gaslit or turned away by medicine, we need to recognise that deeming something to be “TMI” also creates an unhealthy and unsafe environment. It does not matter what our gender is: by refusing to speak about reproductive health, gender identification and mental health and illness, we are taking people’s lives.

I’ve been in pain for more than half of my life, and I will be forever. The damage done to my body – from the schoolyard to doctors’ rooms – that people didn’t want to or weren’t willing to discuss is permanent. I write about my own experiences in the hope it will reach others who need to have their pain validated so they can continue the fight for help. But the onus shouldn’t be on us: this information should be out in the world. We never know when we’ll need it.

• Kylie Maslen is the author of Show Me Where It Hurts: Living with Invisible Illness

• In Australia, the crisis support service Lifeline is 13 11 14. In the US, the National Suicide Prevention Lifeline is 1 800 273 8255. In the UK, Samaritans can be contacted on 116 123. Other international suicide helplines can be found at befrienders.org

Kylie will be a guest of Guardian Australia’s next book club: Women v the Medical System, with Katerina Bryant and Gabrielle Jackson. The event will be held at 1pm on Thursday 17 September 2020 over Zoom, hosted by Australia at Home. To register click here, or stay tuned for the video highlights